We are 154,729 members in 79 forums discussing 122,507 topics.

Topic: Mommy please don't die!

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Unfortunately my son (7) overheard some close relative/neighbor gossiping about the details of my disease sometime last week. He has been glued to my legs ever since. And last night he said that sentence I wish I can somehow forget, but can't. HELP!
He has of course been aware that mommy's sick for sometime and knows it's about the "immune system", but we had not announced the C-word to him yet. I somehow wait for him older enough to handle the news, if ever that could be, and that I am around for the time being anyway, hopefully.

This is a hard one. Isn't it? My boys were 4 when I was first diagnosed and 7 when dx with mets. I always used the word cancer, so that it would not be a scarey word. I always used the words chemo/treatments.o. I never mentioned that I could/would die from this. Now my sons are 11 and one said to me the other night after overhearing my DH and I talking. "Mom, you have a tumor? like a dog? can you die?" I said, yes yes and yes. But that is why I go to treatment and it is keeping the tumors from growing. For some reason they never put the two together. I am preparing my self for more questions and conversations now that they are older.

It sucks to hear our children say these words. It made me so sad when my son said this. It also made me sad when one of my boys around the age of 7 asked me if I was going to have cancer on his birthday.

I remember also one of my boys (age 9 at the time) said that his classmates felt bad that I was on chemo and had cancer (I have been bald 3x), I took this as a teaching moment /learning moment and asked 'do you feel bad I have cancer?' he replied 'No, you had it 3 times and survived'. Then he smiled.

My initial philosphy was to keep cancer talk to a minimum in their lives. I have done a pretty good job and they are pretty clueless in general. But this is starting to change. I wanted to keep their worries to a minimum. My plan is to be honest and tell them things when they ask. Just like sex talks. When my treatments stop working, then we will have the talk. I also plan on bringing in a therapist for the family at that time.

Hope you don't mind my epic post, this subject is near and dear to my heart. Being a mom of young kids with stage Iv cancer is the hardest part of this disease.

Oh, that breaks my heart. My kids are older 25 & 27 but my husband passed away suddenly 9 years ago and i am their only parent. I will answer questions if they ask, but normally don't talk about it. I will when things are more progressed but for now, I'm still working and want life can go on as normal. I can't imagine the weight the two of you (along with others with young kids) must carry worring about the little ones.

Janis, thank you for sharing your experience. I really need to know what more to expect?? I hope I can see his 11th birthday, too. I could not say it was cancer to him b/c he has witnessed so many losses to it that for him cancer is equal to death already. He is familiar with the rest of the cancer vocabulary, ironically.
Since dx, I avoided school activities/meetings so far, so the classmates & their parents don't know anything yet to have any pity talk around him. Well, wasn't worth the trouble, it seems. Time for the counsellor to step in I guess, waaay sooner than I hoped for.

Pat, thanks for the hugs, I needed it. Please can they find the cure now!!

Hugs, I totally understand what you are going through. It's so hard to go through this with young kids. As a parent you want to do everything to protect them. Knowing that you can't protect them from this is my biggest struggle as a parent.
Last year I was diagnoised stage iv from the get go. My kids were 7, 5 & 3. I spoke to lots of people regarding talking to the kids. I was told that I should tell them I have cancer and use real words. What they can imagine on their own is much worse then what I can say to them. Also it makes them secure (even if it's bad news) that they hear it first from a parent or a caregiver. I've never said i will die from the cancer. I was told not to plant thoughts in their heads, however i should try to answer their questions as they come up honestly. For example yes people can die from cancer, but my doctors are treating me and doing everything to keep me healthy. So i have been honest with the kids, but Overwhelmingly I was told to follow my heart and do what I think is best for my children

This is such a hard post. My daughters just turned 8 and 11. My dh and I have had extensive talks with time about my disease and death. Because of the extent of my disease, we have been very open with them that this is probably the last summer. I have practically working with on who will pick them up for school, help them with prom clothes, who will call dh every evening to remind him to come home, my best friednd will help with homework etc. I am blessed that my parents came from India and are going to live with my dh and my kids to bring them up. My mom is an angel and is trying her best to fill my shoes per my instructions. She is letting me move in piece knowing there will be someone to watch and raise my kids. My dh is a great husband but he is a workaholic. they cry and then I distract them. This will not get easier till I actually go. There are moments I fantasize that that my PET, CT, BRAIN MRI, SPRINE MRI will also show !NED on the same day and I get a reprieve with no txs for 6 months!!!! One can dream.
The plan was initially not to talk unless there was major progression. Or tx change that would everyone. Unfortunately, since my dx in Feb, I have had progression every month and tx has changed so often. So we never got the time to sit, calm down and absorb that things will be ok. Got one news, barely got up and then hit us again.
,

I hate gossip and feel so sad for your little boy. Why can't people mind their own business? One of my husband's family members that I have not seen or talked to since 1997 told another family member that I'm not doing well at all with the cancer and the brain event damage I had last year. How in the world can she know how I'm doing? When in fact I have been working so hard to get better. Doctors thought I'd never walk again and now I'm shopping by myself. Gossips, I hate 'em.

Ebru,
My heart goes out to you and your family. My children are grown but I teach first grade and had a child in my class whose father was dx with cancer this year (surgery, chemo, rads). It is difficult to know the best approach as each child has a different personality in the way they process information and handle their emotions. In general, I favor being as honest as possible, but on a level appropriate to a child. If you haven't done so already, check out links on the American Cancer Society's web site for talking to children about cancer. Thinking of you. Caryn

I know it's hard, I think now you know that it's time you tell him. It is important to give bad news to kids yourself, so you can control the information, before somebody else controls it for you. Unfortunately, you learned that lesson too late, so it's time to have the talk.

Here's what I'd say: I'd tell my son that you do have a disease called cancer but that I have great doctors who are doing everything they can for me. That I have faith that I will live for a long time and I have the best doctors who will help me do it, and that you want to see him get married (or graduate or whatever). I'd say that I didn't want to worry him so I didn't go into detail but you didn't want those ladies to put wrong ideas into your head. You are going to be okay for a long time. That those ladies were wrong to gossip about you and if he has any questions about your disease, you are happy to asnwer them. And, if he says "don't died" you can explain that everybody dies, but you are working on staying alive for as long as you can. I think you can reassure him.

My son was 12 when I was diagnosed so it was easier but I still told him the first day. I believe you can't keep things like this from your children as too many people talk, plus they over hear household conversations, see stuff come in the mail, hear phone calls, and pick up on the moods of the parents. When they find out incorrectly, their imaginations take over and make it worse. They don't know how it happens and a lot of time they go around thinking you can just drop dead and they go to school one day and you are gone. So, they get scared. It's important to clue him in to as much of the truth as you feel he can handle. He doesn't have to hear prognosis or life expectancy just yet but he should know what your family is facing at least a little bit.

You can empower him with a message for gossipers "My mom is on medicine that is going to help her live" or something, whatever the message you want to get out would be.

Sorry he had to find out in such a cruel way and shame on the people who were talking about you behind your back yet in front of your son. Some people think kids don't have ears!

Janis, I agree with you completely in your approach - I always answered my children's questions about anything, including sex, as far as they wanted to take it; never pushed the information beyond an honest answer to their question and if they needed more explanation then they came back for more. They were adults when I was diagnosed so I didn't have to be so careful but I do believe that a measured honesty is best, then the children can take as much as they can deal with and walk away when they like. Talking to children about cancer and death must be a horrifically hard thing to do and I feel for all of you ladies with young children.

Lilshatzie & Ann, you are right about "the talk", it sucks now to plan it. Dh is away, guess we should wait for him get back together, it will be easier for me at least. Good thing is, we just need to name it, he is already aware of the treatment details. Maybe some more info on how much the treatment is helping me, as you said. Lesson learned, hope it is not too late and damage is not bad on him.

Seamstress, what can I say, we get hit worst by the closest ones sometimes. I was naive enough to trust the ones around, just focused further at his school, etc.

My kids are 20 and 28 but telling them was so hard because their dad had just passed away the the year before and I was TN. I am still here, stuck in the bed and need help to get and go to the bathroom, but i am still here. Everyday is a struggle now but I don't want to go yet I need more time with the girls. I guess we are never ready?

my boys were 11 & 12 when I was diagnosed. they are now 15 & 16. I've been honest from the get=go, but we don't talk about dying. Won't go there until the time comes. I want them to enjoy life and not live with that worry. I would be angry with those who were talking so openly around your son and I would let them know. Its not their place. Hold him a little bit tighter tonight!

I would be livid. How dare they talk about you for one thing. How massivly rude of this relative to think its ok to blab to the neighbor about your private details! And second thing, they both should have known better than to do so with your child in earshot. I would rip them both a new one.

I am older, my children are older. This makes me so terribly sad to read and as a mother can understand the pain that this causes for all of you. No parent wants a child to face the harsh facts of life so early.

My children are older but it is the grandchildren for me - my 7 year old granddaughter when we left for home after a family vacation ask her mom "will I get to see my Nana again".

As the younger moms here that are in your shoes have shared, we have been honest, to their level, of what to explain to them.

Hugs to all of you - being a mom to young children is without doubt the hardest part of this disease and journey

Oh great, I cannot sleep now with all of this going on. Thank you everybody for responding, I feel so lost right now...Ironocally I used to work as a consultant, get paid for ideas!!! The cancer & everything with it changed my life completely so fast, I sometimes do not have the right state of mind and/or wisdom anymore to cope properly with it all.. but it is my baby I have to think of first. I wish I could take back time. Anyway I have to look ahead...

Formygirls, having read your post, I saw my near future of what's coming along. Oh God! And I thought I needed the hugs. Dear friend thank you so much for being by my side when there is so much more going on with you. I "usually" never give up hope, and will pray for you tonight that the progression you are having stops for a change.

Banjobanjo, Susan & Jenn3, I sort of was guessing it was probably not going to get easier as he grows, so I know it is not easy for any of us, whatever their ages are... Sigh..

Pat, thank you. It is a good one indeed, for he is sort of a wise guy, wouldn't buy just any explanation, so it is really hard to choose the wording right now.

Lukejessesmom & Stormynyte, you are right. People are people and the damage is done now. How we have to deal with everything else, just on top of simply trying to live. Thank you for your support, I feel empowered.

At the beginning of each school year I email my son's teachers and tell them of my cancer and what is going on. I ask for them to keep an eye out for my sons should they notice any behavior changes. I also let them know that I would contact them should my health take a turn for the worst. Every teacher has been awesome. Many sharing personal experiences.

so, as my boys enter middle school. I have now contacted the MS counsler.

as to their friends families.. I function on a need to know basis. I would say only 1/2 of their friends parents know that I am stage IV. Many that do , are AWESOME support. I often call on them to take my boys when I do treatments or have scans. Never under estimate your community of parents and friends.

Fitztwins has a great idea. As a teacher, I really appreciate it when families tell me about major life events which may effect their child. I am not trying to be nosy but it allows me to communicate with the parent if it somehow effects the child at school. More importantly, it enables me to understand why a child might be acting in a certain way and help them through it with a hug, extra help with school work or just a place to feel safe and a compassionate person to listen. Caryn

Thank you all for thinking along. Upon dx we immediately contacted Ds' school and informed the guidance & teachers. They have been wonderful with everything, so supportive. Ds had adapted school right from the start, in the first grade, and was one of the outstanding students in his class this past year, and my dx has not yet been a bad influence on him at school. It was counselling who advised to hold this information from other parents until next year, actually. I can guess why, having witnessed myself an incident about ds' classmate with her own personal problems struggling, and some class parents not having the right attitude toward her. I will definitely try to get to know better the parents to choose whom to trust when needed.

This is the worst EVER!! My kids were adopted at 5 and 6 y/o. The very first thing my 5y/o son said when I told him I had cancer was "I don't want to lose another mom." nothing could have hurt me more. BUT... he is such an intuitive kid that I knew i had to be straight with him. This has been an extremely difficult time for all of us, but there is no way I could have been anything less than completely honest with him. He would have known. Thankfully I am now NED and can share that fantastic news with him!! I don't think there is one right answer...we all have to do what we believe is right at the time.

Stage IV IDC 4/2011. (2 small mets to back, 2 small mets to liver) ER/PR+, HER-, BRCA-. 6 doses of A/C-done-8//2011. 2/20/12---NED!!!! What an amazing gift!!! Fighting hard to win this battle!!! Enough with awareness, it's time for a cure!!!!

So happy for you, Iwillwin! I agree that what is right may be different at different times. At 7 years, DD was dealing with a bald mom who needed a lot of help and was often in the hospital. I told her teacher and after-school caregivers. Although I didn't like her teacher's immediate (somewhat selfish) response - "why does this have to happen in my class?" - she dealt with the resulting issues quite well. The caregivers, who had seen me deteriorating, frightened her the most with their concern for me. We tried to tell her that I was being treated and would eventually get stronger. I always thought it better to be optimistic until one was certain of a dire outcome. In 4th grade, I also told the teacher but she was a bit more skeptical, partly because I didn't mention my stage and looked healthy. She might have thought this was some kind of ploy to gain her sympathy for my daughter. Then she probably talked with some other people in the school or was just simply impressed by my daughter and was more understanding. As my daughter enters a new school, I will probably not tell the teachers or anyone else anything as long as I remain NED. Unless DD has some kind of crisis resulting from her growing understanding of this disease.

Ebru, wishing you the best in dealing with your son's situation. (((Hugs)))

i just took my 12 year old girl to the doctor for a good checkup. We have always talked proactively about my cancer, about my dying, who will help her. The doc was so impressed that we could talk so easily about Aunt kaye helping her decide when to get certain vaccines etc.

I would slowly, gently and persistently give them all the info they need so they might not suffer too much in the future. We know they will have a really tough time. If it is not a schock i think that is better.

Iwillwinthisbattle & Heidihill, first CONGRATS with your news of NED! Hope you just stay there. You are such great examples to look up to & move along in this BC journey. I am constantly thinking about how to share my current news with ds that I actually hadn't considered for once that the news could get better later on.

Apple, you sound so comforting with your experience that I actually can imagine myself too taking ds to one of my appointments.

A little story......when my daughter was 6 she was pulling at her arm and asking where it came from. This was first thing in the morning and I was getting ready for work, dressing her 3 yr old brother and trying to get her to put her shoes on. So I told her that I didn't have time right that instance and promised to discuss it when we got home after work. Well, I worried all day long how I was going to tell the 6yr old how babies are made. I didn't want to make something up but I was at a loss. So I asked almost everyone I met that day (that I knew at work) how they would/have handled that questions. I worried myself all day. Well, after I picked them up from daycare and got settled at home I told her that I was ready to answer her questions. I had no idea how I was going to do this so I started by asking her again what it was she wanted to know. She again pulled at her arm and asked "where does skin come from?". Well I cannot tell you how relieved I was!

We have a very open household and always use official words. I have a DS(7) and DD (9). Everyone at their school knows what is going on and they've been seeing the school counselor. My DS asked her how you get cancer, by doing something, catch it like a cold, by drinking out of the same cup? It never occurred to me that he was worried about getting it himself.
I took them into the chemo room so they would know what it looked like. They thought I would have to be laying in a hospital bed, once they found out I had a flat screen tv to watch, they lost all sympathy. I took them into the radiation room. My DS was scared, but the techs were fantastic. He thought they reached in pulled some insides out shot it with lasers. They both said they were more comfortable after they saw that I just get to lay down and take a nap. The unknown has defineatly been more scary than the known.
We did explain that I might get really sick and die, but I am taking medicine. Once a month, we make the kids tell a list of at least 10 people that love them and they can talk to about anything. We want them to know they are loved and safe among all else.